This is a photo taken at the 2006 Hermansky-Pudlak Syndrome Family Conference. As you can see, we were having a good time!Tomorrow night I’m missing one of the events of the year. It’s killing me because I want to be there so bad. I’ll probably interrupt the festivities a dozen times on my mobile phone, just to feel like I’m not missing out on too much.
This week a number of people from the Hermansky-Pudlak Syndrome listserv. are at the National Institutes of Health at the same time. So, a plan has been underway since March for these HPS’ers, as well as several Washington-area locals, to meet up for dinner at the Cheesecake Factory. I can assure you a very good time will be had by all.
I warned Kevin, our nurse practitioner, to just leave a standing order for the antacids or the nurses’ station would probably be pestering him all night. HA! Actually I tried to get in on the action by offering myself up for more poking and prodding. I asked Kevin if, perhaps, there wasn’t some sort of sample someone in the lab needed – maybe more lung fluid, or perhaps more skin samples? Come on Kevin, I cajoled, can’t I interest you in some blood, or maybe some intestine samples? I really want to go to this party! Kevin took it all in fun and agreed to supply the necessary passes so everyone could break out of the hospital for a night.
I am sure that this is true of all illnesses, especially ultra rare ones, but there’s a bond that many of us with Hermansky-Pudlak Syndrome share that is so close and so liberating. I think it’s especially true for those of us that have had any degree of medical trauma as a result of our HPS.
Don’t misunderstand. This dinner isn’t about HPS really. It’s about spending time with the few people on Earth to whom you don’t have to explain anything. It’s an unspoken understanding.
When we’re at an HPS conference, it isn’t as though we’re sitting around in the hotel bar, or at dinner, waxing on about Hermansky-Pudlak Syndrome. Nope – instead we’re usually laughing, dancing, teasing each other and letting our hair down. I’ve had several people tell me that they feel the most “free” at the HPS conference. I keep trying to figure out why that is – and I think maybe I’ve got it.
Even if not a single word is spoken about HPS, there’s nothing that one has to hide in order to relate to everyone else. Take my little lunch outing from work the other day. In order to have a conversation with a person I barely know, I’ve got to conceal this whole huge thing about my life. I can’t explain how I spend my evenings, or what I’m doing with myself.
For most people HPS isn’t quite the social issue it is for me because either their health isn’t yet much impacted, or because they aren’t spending so much time on it – but when HPS’ers get together – it isn’t an issue for anyone.
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